As I mentioned a few blog posts ago, you know your time on Earth is winding down when the doctor says you are now eligible for hospice care. He or she makes that determination when your disease is no longer responding to medical attempts to cure it or slow its progress.
(Palliative care includes much of the same comfort care as hospice but also includes continued curative care.)
As of last Friday, I am officially in hospice which consists of an amazingly wide range of care. I will get to that but first, let's cover the most basic nuts-and-bolts questions:
- The goal of hospice is to support the highest quality of life possible for whatever time remains.
- Hospice care is most commonly provided at the patient's home but is also available at hospitals, nursing homes, assisted living centers and dedicated hospice facilities.
- In the United States, people covered by Medicare can receive hospice care if the physician thinks the patient has less than six months to live. Sometimes old people fool the doctors and live longer. Hospice can usually be re-certified for another six months. And another and...
- Hospice is generally paid for via Medicare, Medicaid, the U.S. Department of Veterans Affairs and private insurance. Hospice programs differ, but many offer care based on need rather than ability to pay.
I had expected to go to the hospice offices for the introduction to their services, but no. The nurse came to me as will all hospice providers. For the past couple of months I tire more quickly and easily than before so this was a welcome surprise.
We spent the first couple of hours going through the explanatory binder that is my guide to the service and my care. I have a team now. A large team. A registered nurse who is also my case manager; a physician; an aide who is also a certified nursing assistant, can help with light housekeeping, help with laundry and such other tasks as become necessary, and regularly check my vitals and other indicators.
There are also a medical social worker to help with a wide range of personal and practical issues; a non-affiliated spiritual care counselor; volunteers who can provide companionship and various sorts of non-medical help.
There are more but those give you an idea of how comprehensive this hospice is. The nurse made it clear that all of their services are tailored to my specific needs and desires.
But wait. There is even more I would not have thought of. The hospice now takes care of most of my medications, delivered to my door. In my case, half are paid for by hospice now – they buy in bulk with attendant discounts, the nurse explained.
Others are paid for by my Medicare Part D coverage or by me but almost all are delivered on a regular schedule by hospice.
They also supply all needed medical equipment. Recall that it was Friday I met with the nurse for the first time. On Saturday, my new oxygen concentrator was delivered, hospice arranged for the previous one to be picked up next week by that provider, and the delivery person moved the old concentrator and big emergency tanks to a space near the front door so that I wouldn't need to tackle that. (They're heavy.)
I did nothing but stand around and open the door for the delivery man.
This taking over of the arrangements for drugs, oxygen pickup and delivery, and whatever else becomes necessary in the future is a relief to me. In the past two or three months or so, it has become more difficult for me to organize all the little things as their numbers increase. I manage to get them done but it takes a lot of effort, not to mention the annoyances when things go wrong which tire me.
By the way, my new difficulty in organization affects this blog too. You may have noticed that recently there are fewer items in Saturday's Interesting Stuff. That's because over all these years of doing it, I have probably viewed or read at least a dozen videos or stories for each item I publish.
But I'm slower now, I wear out more easily and have trouble keeping track of them – mostly due to a late-age distraction problem. Hence, fewer items on Saturdays.
Getting back to hospice, that binder the nurse left with me has sections on end-of-life legal documents, lists of best-practices in self-care, charts to track medications, home safety tips, a terrific daily journal where I can note emotional well-being, pain level, body responses, etc.
It's not that I need all these things necessarily or yet but they are there when I want to check something, they are smart and they are valuable.
I'm writing most of this on Saturday afternoon. That oxygen delivery man arrived on time, was friendly, made sure I know how to use the equipment and we had a nice time chatting too.
Later in the day, a different nurse from Friday telephoned to see how I am, whether I needed anything and to give me the name of my nurse/case manager who will visit today, Monday.
In the evening on Saturday, the emergency drug kit was delivered. This is kept in the refrigerator so it is immediately available if I have telephoned with an emergency and can help until the appropriate caregiver arrives.
What all of these people did – the nurse who enrolled me on Friday, the oxygen delivery man, the nurse who telephoned with some information I needed, the drug kit delivery person - was repeatedly remind me that if I need anything, from a serious medical problem to just any old question, to call them.
They are available 24/7 and there is always a real, live person, a registered nurse, to answer the phone.
As much as I appreciate every bit of this, it isn't easy for a woman who has always done everything for herself by herself. Unless I am bleeding profusely, I have always thought of it as an imposition on the other person to ask for help. Just recently, an old friend in New York City gave me a kindly lecture on the fact that she and I share that trait and now I need to let it go.
In just these three days, I already feel a relief knowing there are people who can help me with so much and I seem to be going along with them although I'm not completely comfortable yet.
But I'm getting there. Geez, I guess if you live long enough you learn all sorts of new things.
I don't know if this is an exceptional hospice or if all hospice care is as comprehensive and professional and comforting as this one but, as with the doctors and nurses who cared for me during the past three years, I seem to have landed in the best possible place for these last few miles of my journey.
What I do know for sure is that I have never heard about hospice from people who were familiar with it - family members, caregivers and a couple of patients - in anything but superlative terms.
If you have experience with hospice, do let us know about it in the comments below.